I often hear people telling me that I can’t possibly be a
good caregiver for Riley because of all our past history. I’m told that it
makes me hostile and that he would be better off in a nursing home. I don’t
agree with any of that nonsense. I made a commitment to both my daughter and to
Riley to “see this through” to the end. That’s what I intend to do.
When Riley returned home after having been in a nursing home
for a week so that I could get some respite, his health had greatly declined. I
called the hospice office and told them I believed that Riley had a bladder
infection and that I needed a prescription for something to treat it. It took
more than two weeks for someone to come get a urine sample for testing. Then it
took about five days for the lab to report that he did, in fact, have a urinary
tract infection. We received the medication late the next afternoon.
While we were waiting for the medication, Riley became
increasingly sick. By the time I got the first dose into him, he was spiking a
temperature of 100 degrees, was not eating, could not get out of bed, could not
move his legs, had blood in his urine, and was hallucinating. I monitored him
through the night and gave him Tylenol to try to break the fever. It reminded
me of the times when my children would become ill and I would do everything I
could to try to nurse them back to health.
I know and understand that Riley is in hospice and no heroic
measures will be taken to prolong his life. But, it seems to me that the degree
of his UTI seriousness should have been attended to in a more timely fashion. I
don’t know what hospice was thinking. Was the attitude, well he’s dying anyway
so there’s no hurry to do anything for him? Where does the line get drawn
between what they will do to alieve his discomfort and just letting him go? If
his arm was broken, would they not set it? If he fell and injured his hip,
would they treat the injury?
It makes me angry because I was told that things of this
nature would be treated. AND they did treat it – eventually. As of this morning
he is feeling better and hopefully the UTI is going away. So, the next
question, (asked by a well-meaning friend) what difference does it make to me?
He’s a drunk who so abused his body with alcohol that he is fading away. With
all the misery he has caused me in the past, why do I care that he has a UTI or
anything else debilitating for that matter?
There is a point in time when the caretaker of an end-stage
alcoholic switches gears and just becomes a caretaker of a sick person.
Overall, it is difficult to be Riley’s caregiver. Not because of the indiscretions
of our marriage, but because he brought this illness on himself. After years of
doctors, family, friends, EVERYONE telling him he would kill himself with
alcohol, he believed, and still believes, he is invincible to the consequences
of alcohol abuse. I know, I know. It’s called denial.
That’s what makes it difficult for to be his caregiver. In
Riley’s eyes, I am to blame for him being in the situation he is in. If I had
not called the paramedics when he had his heart attack, he would be dead and we
wouldn’t be going through any of this. Because I am to blame, he feels no drive
to do anything for himself. I am to simply do as he says and do them the way he
says for me to do them. That attitude did not work for him when we were a
couple and it certainly doesn’t work for him now. But, I have to give him
credit for consistency and perseverance – he keeps trying.
If Riley had never been an alcoholic and got cancer, I think
my attitude would be different. If Riley ever once said “Gosh, I really screwed
up” I would have a softer attitude and be much more attentive than I am. If he
ever apologized for having to ask me for anything – anything – I would be more
agreeable to meeting his needs.
However, when Riley was lying in his bed last night and I
could see the discomfort on his face, I actually felt sorry for him. I wasn’t
sorry for him being at the end of his life. I was sorry that he was sick on top
of the dying situation. I wanted to help him so he could get some rest and feel
better the next day.
When Riley was drinking the caregiving issue was very
different. The goal then was to keep him contained so that he could not be a
danger to himself or others. I didn’t try to cure him or force him into taking
care of himself. All those detox and rehab experiences taught me that he would
never cooperate in his own healing. My attitude was one of acceptance for what
was never going to change.
We are now at the end result of his drunkenness. His party
is slowing coming to a close. It’s time because to continue on is just a means
to make him more miserable. I will not
do anything to hasten the closing of his doors. I will let it run its course.
Hi Linda, I started reading your blog 3 weeks ago. Actually my sister found it when she was trying to research the symptoms of Endstage alcoholism. My mother is an alcoholic, and has been for years. We all just kind of got used to it and went on about our lives, but then about 3 months ago things started to change. She started eating less and less and had some major weight loss. I have been working in California and went to visit at the end of June through end beginning of July, but I saw a dramatic change from when I had seen her in March. This last time I was out she was barely touching any food, she said because it made her nauseous, but she continued to drink her beer, and to this day she continues to drink. She started having having fecal incontinence and refuses to bathe. To make a long story short al the symptoms that she talk about in your blog is what she is going through, including the denial. The funny thing, well actually the sad thing is I am a nurse. I left the ICU to work in a hospice, and although I've taken care of a lot of Endstage liver alcoholics, I just really never knew what happens In between when they get diagnosed either because they had a bleed out and we would care for them in the ICU to when they become Endstage and are referred to Hospice! Maybe I was in denial that this could happen to my mother, I don't know. I just wanted to say to you that as a hospice nurse what happened to Riley and having to wait that long for the hospice to go and collect a urine sample is not appropriate at all. As soon as you reported the symptoms someone should have been out there at the very latest the next day! A patient even though he is in hospice does not have to die from an infection. Urinary tract infections if they go untreated can cause urosepsis and the body can go into shock and a patient can die and even though he's hospice and Endstage it is expected that he'll die from his disease and not from an infection. It is our duty to treat the patient and often times they are so compromised that even if we treated they may die anyway, but a least we tried. All hospices are regulated by the state and if they treat Medicare patients the govt is involved! You need to complain, ask t talk to the administrator at the hospice and if you don't get some resolution then call the state! Document the dates when you first called and when they finally went out to collect the sample and what you saw Riley going through! Remember the hospice is there to provide comfort care and if it means treating an infection that is causing discomfort it's all about comfort. Blessings to you, it takes a very special person to do what you are doing, not many people would. At the end of this month I'm going back home and we will sign my mother up for hospice.
ReplyDeleteLinda, people that question you have not walked in your shoes! Your willingness to care for him is an act of love, perhaps not the love that others define, but love nonetheless! I admire your strength!
ReplyDeleteI agree wholeheartedly. There is a distinct difference between caring for someone who is ill and someone who has brought the condition on themselves. When Greg was ill from the effects of alcoholism, I used to get so angry and dismissive. I used to think I would feel much different if he had cancer or a broken leg. But when he was on his deathbed (detoxed) and experiencing pain and discomfort as his body shut down, it was a different emotion I felt... pity, sorrow, genuine concern.
ReplyDeleteWhat a compassionate caregiver you are, Linda. Keep it up, and don't listen to the naysayers.
ReplyDeleteWow, great post and awesome blog. Good for you and good luck. I can't imagine what you are going through.
ReplyDeleteI left my husband. Along with the alcohlism is drug use and infidelity. He denies the drug use and infidelity. He drinks beer and bourbon everday. I love him so much but he lies and is mean. It hurts me. I feel like I'm on a rollercoaster and I also feel guilty. Couldn't take anymore. He refers to the alcohol as his medicine and he smokes even after the doctor warning him of precancerous cells in his mouth. I'm divorcing the man I love. Heartbroken . Thank you for writing and sharing your experience Linda. I found it researching late stage alcoholism. I pray for your strength and God bless you for loving unconditionally.
ReplyDeleteMy husband's dad is exactly like Riley. He refuses to stay in hospital or hospice or nursing care because he can't drink there. So he relies on his wife to literally wipe his butt and feed him and change him. Do you think he's ever said thank you? Or that he appreciates any of it? Of course not. He tells her that she's fat. She needs to lose weight. She needs to make him something better for dinner. She needs to bring him more vodka. More chewing tobacco. Pay for more cable channels.
ReplyDeleteShe hates him. I know this for a fact because she told me. But if she didn't take care of him, my husband and I would have to, and my husband would be a divorced man in a matter of weeks. So she does it for us.
I can't wrap my brain around the contrast- someone so incredibly selfish married to someone so incredibly selfless.
Perfect bog post for this moment...I was just dropping in to post this comment and add share a thought I came up with as I finish shampooing up the purple vomit from my freshly steam-cleaned carpet while moving household by myself as my drunk in liver failure just finished taking all his meds in 2 days after his 5th time in the hospital in 2 months...and there's so much more...not going to talk about it all...Btw me managing his medication is impossible and he gets violent and dangerous...long story, all out of answers. Anyway...the "meme" I thought of was really clever, and maybe someone else already has thought of it...a twist on a well known saying... "Life's a bitch, and then the alcoholic dies." I did my job...he says he believes in Jesus. ..and I know my God is merciful to the weak, broken, brain-injured, mentally disordered ones. I'll see him with his perfect spiritual body and mind in Heaven. Yes, I truly believe that. You wouldn't think it the way he talks. ..like a vile, hateful, unforgiving, cursing demon...but hey, that's a damaged frontal lobe for you. Hang in there Linda. ..you've learned a lot. Tell him you forgive him, ask for his forgiveness, and let him go home.
ReplyDeleteI think you have a great deal on insight into your husband's denial. I also think you have a lot of compassion, and a great attitude about you commitment to his care. I can only imagine that you have a lot of mixed feelings about the situation you find yourself in. So many of us have people we love suffering from addiction. Is there anything you would have done differently years ago, in the hopes of avoiding where you are now?
ReplyDeleteWhen I found this blog, it made me finally file for divorce and start planning my exit from this hellhole of a marriage. For many years, I lived in a fear/apprehension/hope(?) that he will die already. I mean people who are healthy and take care of themselves die from some sudden diseases, how in the world is he managing to stay alive after all this self-abuse??? Then I found Linda's blog. Wow, they truly are immortal! If I won't get out of this, NOW, he will probably outlive me!!
ReplyDeleteI still feel deeply sorry for him and I would like to find him a place where he could spend the rest of his life with minimal discomfort. Ha!! If only it was that easy. He has no money and pretty much nothing, came with nothing into the marriage, contributed very little, hasn't worked for many years. I have assets, money and a good job. But NOT ENOUGH to pay for a decent private home for him. Not that I would think it's fair, but I probably would do it (paying some reasonable monies for his care) albeit reluctantly. But no! It is either Medicaid (doesn't qualify because he is married to me!) or some obscene amounts of cash!!
Feeling trapped, enraged, sickened by all this! Still not ready to throw him out onto the streets. Divorce is going to take many months. I don't know if I can survive many months. And even then, what then?? God help me.
I am married to an immortal alcoholic that I love and can't stand him much of the time. (That doesn't sound like it makes sense). We are separated, and I managed to lead him to an apartment that is funded by HUD. I too feel guilty. I couldn't live with him any longer with his controlling ridiculous ways. He had stopped that for a long time, but when he found out he had a serious heart condition, it started again. Right now his ammonia level is through the roof, and he's very difficult to deal with. I keep trying to help him even though we don't live together. We talk everyday. I just don't like to see him suffer.
ReplyDeleteMy grandfather drank and smoked himself into his declining health. He was abusive to my grandmother and my father, yet they gave him his space and was there to help him as he lost himself to the fragility of his body. Its about compassion in the face of the past. Its about gratitude in the face of pain. Thank you for sharing!
ReplyDeleteJeffery @ New Dawn Treatment Centers